Dexamethasone: the good, the bad and the ugly

I have a hate/hate relationship with Dexamethasone, but I have to acknowledge that it has knocked my light chains down all on its own prior to starting treatment  and whether I like it or not, it is part of my treatment and I have to get on with it. This is about my relationship with Dex.

The Good Stuff

Dexamethasone is a corticosteroid seemingly used in all treatment combinations for myeloma and sometimes on its own, in fact Dexamethasone, given in high doses, is the most active single agent for the treatment of myeloma.  I find this quite astonishing given the development of the many new drugs over recent years.  Dex also increases the ability of chemotherapeutic agents to destroy myeloma cells as well as helping reduce inflammation and allergic reactions to chemotherapy. Quite why or how it is so effective in the treatment of myeloma nobody seems to know.  It appears to cause programmed cell death, also known as apoptosis and can trigger the destruction of myeloma cells.  So that is really good.  I know this absolutely as before I started treatment waiting for the trial to start I was given two 4 day courses of Dex with about a month in between to try and keep the myeloma under control. Before I started the second course my light chains had gone sky high to 6400 but a couple of weeks later they had dropped to 2900.

However it does come with many strings attached in the form of side effects. The good ones for me are:-

1. More energy on the days I take them. I don’t take them everyday but on days 1,2,4,5,8,9,11 and 12 of my 21 day cycle, I take them on the day I have Velcade and the day after. Thanks to Dex, I have danced, stayed up later than usual, played tennis,  tidied up the garden for the winter and cooked dinner for friends.  Dex has helped overcome the fatigue caused by the chemotherapy. I am usually more upbeat and confident on dex days.

2. Erm, can’t think of anymore good things………

Although not a side effect, I quite like the fact that the tablets I take are supplied by Onyx (the trial sponsors) and the writing on the box is in German with a leaflet stuck  onto the box in many languages. The tablets are also quite pretty as they have a curvy criss cross pattern and they are 5mg per tablet whereas the UK standard ones are 2mg. My trial bloods are sent to a lab in France to be tested so I feel as if I am participating in some special stylish european project!

2013-11-16 16.19.50

The Bad

1. Insomnia and sleep disturbance. I am often wide awake at 3 or 4 in the morning, unable to get back to sleep but also unable to do anything useful with this time other than stressing about how I am going to get up for work in the morning.

2. Dex gives me an insatiable appetite for sugary junk food and this is precisely the kind of food that I shouldn’t be eating at the moment because I have steroid induced diabetes. Dex raises my blood sugar levels on the days I take it and I have to be careful what I eat ie cut out the sugary, refined foods which are what I crave.  I monitor my blood sugar levels with a testing kit although it has never been made clear to me what I should do if they are too high or what symptoms I might experience. The docs wanted to put me on Insulin but I said I would try and manage it through diet. However on the days I don’t take dex, I eat plenty of cake and anything else I can find in the cupboard or the fridge.

3. Following on from the above, not surprisingly is weight gain, can’t sleep, have something to eat, crave food, raid the fridge etc etc, I can still find plenty of non sugary junk food to eat. Weight gain is pretty common on steroids, unfortunately corticosteroids are not the type of steroids which can turn fat into muscle, I think those are anabolic steroids.

4. Muscle wasting,  I have gone from a fit triathlon competitor to a soggy shape in the space of a few months. Oh how the mighty have fallen!

5. On from the above, I wish I could channel the energy that dex gives into doing some exercise but unfortunately another side effect that I experience is heavy legs, they sometimes feel like they are filled with concrete which of course makes it difficult to run, walk or do anything much.

6. Slightly blurred vision, like my glasses always need cleaning.

7. Hirsutism and thinning of hair on the scalp.  I have more facial hair and a faint moustache but my hair is thinning on my scalp. Not very attractive!

8. Red round face, often called a moon face, the classic sign of taking steroids. People on steroids should have their own Moonies cult!

moonface

Whilst googling images of a moon face, I came across this image below about Cushings Syndrome which is a hormonal disorder caused by prolonged exposure of the body’s tissues to high levels of the hormone cortisol. Long term use of dexamethasone can lead to Cushings Syndrome and it appears that I already have quite a few of the symptoms!

Lady

What I experience above is awful but I can put up with having a moon face (with a moustache), being overweight and exhausted in the knowledge that Dex is helping my treatment work and when I stop taking it these symptoms will eventually disappear.  In the meantime I can work on my vanity issues!

The Ugly

This is much harder to deal with.  The ugly happens more when I am withdrawing from dex especially in week 3 of my cycle.  My consultant wrote on the consent form that I signed before starting treatment that it caused “emotional lability”, the medical definition of which is “a condition of excessive emotional reactions and frequent mood changes”.

I guess that sums up my experience in a clinical way although my mood doesn’t alter much between low and high, more like low and really low. I am depressed, tired and shaky, mentally and physically,  I am easily irritated by myself and others, restless and edgy.  Nothing I do or say feels right but I don’t know  what would feel right.  I find it difficult to be with people because I feel socially inept and lacking in confidence.  My voice is gruff (another side effect) and my hearing slightly dulled so there is a real sense of being disconnected.  I note I referred to feeling disconnected in my last post as well, Nothing to say and wonder if that was the dex effect too without me realising it?

I have to keep reminding myself that what I am experiencing is a purely chemical reaction in my body to the lack of the steroid it has become accustomed to and that once I stop taking it eventually I will return to my “normal” state of mind. Not sure what that is these days as this year so far has been full of emotional turbulence. Whatever it is, I look forward to finding out, who wants to be normal anyway!

“It may be normal, darling; but I’d rather be natural.”
― Truman CapoteBreakfast at Tiffany’s

 

25 Comments

Filed under Cancer, chemotherapy treatment, Health, Multiple Myeloma, Myeloma, Relapse, Uncategorized

25 responses to “Dexamethasone: the good, the bad and the ugly

  1. Sandra abraham

    Hi Wendy a lot of these symptoms I have and I’m not on Dec’t lol sorry I shouldn’t be flippant !!!! Love reading your blog xx Sandra xx

  2. Tib

    You have a wonderful writer’s voice – a lovely combination of humor and practicality. My partner has MM and we are four years now on the Cancer Road…that same combination has kept us afloat 🙂

    • Thanks for your lovely compliment about my writing, it is good to hear your partner is doing well on that combination.

      • Tib

        Dan is on his fifth or sixth different chemo cocktail regimen, and has had two auto stem cell transplants – he has some super smart and motivated cancer cells…. I actually meant the humor and practicality combination.

      • Oh LOL I got that wrong, sounds like Dan has had a pretty busy last 4 years, hope the treatment regimes continue to outsmart the cancer cells.

  3. Pat

    Oh Wendy I wish I could magic it all away for you. If it makes you feel any better, I look very similar to Minnie G & that`s on a good day! (hair thinning as well). I hope all the treatment works for you and you can look forward to a good long remission.
    I`m always at the end of a phone, even if you want to grouch at the unfairness of it all. You are SO strong, you are an inspiration. When I don`t feel like doing something, I think of you, feel ashamed of myself, and get on with it. Keep your light shining bright. Lots of love Pat xx

  4. terry

    Hi Wendy

    Thanks for your comments regarding Dex, it sums up the effects perfectly.

    One way of counteracting the early morning wake up, is to have a bottle of wine the night before, it doesn’t always work, but I do normally get past the ridiculous, e.g. waking up between 2-4am.

    I’ve just halfed my treatment, as the effects were getting just too much. I’m now on Velcade every two weeks, instead of 4 weeks on, with one week break.

    Keep up the writing, it’s great.

  5. Well done Wendy. You got the teeter totter ride of steroids completely right. About the time one gets over the crash from the high, it’s time to do it all again.

  6. Oh God, the dreaded Dex. You have my sympathies. There’s quite a lot of debate amongst the oncs that cutting back the dose doesn’t adversely affect its ability to snuff out the MM. Perhaps worth checking with your specialist?

    tom

    • Hi Tom,
      I started on a reduced dose on my 5th cycle and it does seem to have helped with my low mood in the week off treatment and hasnt had any adverse effect on my test results so that is good news.

      Wendy

  7. Jim

    I am taking dexamethasone and velcade for waldenstrom.
    Coming down from them makes me feel like a junkie.
    Thanks for your writings and God be with you.

  8. 314really

    Reblogged this on becoming 65 and commented:
    …what she says.

  9. Bill

    Hi Wendy, hope you’re well. Thanks for this particular article. I did a search on “what is dex doing to my body” and found it. It helped me to understand a few things, more research now. Take care.
    bill.

  10. Jill Rosenberger

    I’m glad you posted this. I hope you are doing well and still look in on this once in a while. My husband has two lesions on his brain. Mets from lung and the swelling is being kept at bay with 4mg of dex every 6 hours. I have to wake him every night to take it at the alloted time. He is exhausted. Been on it for about 3 weeks now and has at least 4 more to go before they wean him off. Typically he sleeps then Wakes for the pI’ll then sleeps til about 3 am. Then he is awake and ready to eat anything he can grab. But has hiccups and upset stomach. Then tries to sleep til his next dose at 6. Goes back to sleek on and off til 10 ish and then is starving and stomach upset again. Low energy all day so we go through the same kinda weird cycle all day. He is retired so he can nap and doesn’t have anywhere to go which may be another problem . He has the red moon face and is getting the belly. Skin is dry and starting to lose some muscle tone in his arms and legs. Anxiety and depression. It is horrible. Just watching him do this is horrible. However it is the only thing keeping the brain from swelling. Need better drugs to deal with this stuff. Anyway, hope you are well and thanks for helping me understand some more.

  11. Patricia Oberg

    I have just started on melphan and dexamethasone so I appreciate all the comments on to what to expect. I am on the drugs for for days then off for 31/2 weeks to do it again. I hate the tensed up feeling of never being relaxed. It seems when I am high I can’t focus on doing anything productive.
    Then I crash and sleep.
    Bottom line I just hope it works.

  12. As an MM person, my husband really appreciates your comments about Dex. As his spouse, I really appreciate it, too. Thank you.

  13. Sharon

    Hi Wendy,

    Your article gave me a lot of insights that happened To me when I’m taking Dexamethasone…. Right now, I’m having some Cushion? (If I get it correctly) side effects as well as emotional rollercoaster.

    May I know how long does it take to be back to normal after weaning off Dexamethasone?

    I take Dexamethasone everyday and I have 8 more days to go till the medicine treatment ends ……

    Thank you so much !

  14. diane macko

    Hello ,I have just been reading through these posts, and just had to reduce my dex as wired ,moody, buzzing with energy ,can’t sleep ,verbal diarrhea,weepy or moody etc .I am 45 kilo after weight loss so for dex my appetite its great. When on 8g a day I just had no sleep and needed to just walk..or clean the house, looks good 🙂 just do anything rather than sit with the shaky feeling . Now reducing .. I have found that I am much calmer and much more me , Humm didn’t like the dex me with all the mood changes..Now.. The change from high on steroids (energy ) and very little sleep to being Exhausted but have a new body clock that has got used to being awake at night , hence being on here at silly ok 1.20 am.but this could be 3.4.5.am. still silly ok .. anyway…Just how exhausted you are from it all hits hard …after using false energy for the 3 weeks of high dose , reducing down slowly I am totally Knackered.from sleep deprivation and new body clock not listening when I say I want to sleep till at least 8.. Guess its a time thing . This is where I am now .. will come back and tell you how it goes in the getting back to normal if any one would like me to. Guess we need them though :-(. Rest lots .

  15. Wendy

    Dear wendy🙂
    My name to is Wendy and I too take dexamethazone. I have an issue with my lymph nodes in my body swelling and instead of figuring out the issue .They prescribed this to me I have severe kidney and blather infections which I’m told is from this medicine sleepless night food craving weight gain. Do I suffer from the pain of swollen lymph node or take the drug that give brutal side effects.I too am social awkward and find I can’t relate to anyone. I just wanted to let you know you are not alone in this 😜 crazy struggle with the good the bad and the ugly .when I’m a wake at 3:00 I’ll give a shout out cause girl I feel what your going throw you need to chat at anytime please don’t hesitate to email me. It be great to talk to some one who understands anyone who needs to chat about what there going throw email me at wendyhaslam15@gmail.com trust me I get it..oh and who doesn’t love the feeling of the roller coaster ride after yo go off

  16. John

    Hi I am a 50 yo male with lung cancer metastasized going through chemo and awaiting radiation on my brain. Started dex a week ago to reduce swelling around the brain. Never was a big eater just smoked cigarettes and drank coffee all day. Tonight I stood in my kitchen and ate everything in my fridge didn’t stop eating for over an hour and a half! Hard boiled egg, cheese, olives, chips and dip, almonds, two cucumber sandwiches, and six cookies. Then I started on the $30 worth of candy I bought at the drugstore this morning. I only went there cause I was bored and couldn’t sleep. I feel great on dex problem is my job is such that my clients CANNOT know I am sick long story but it would negatively affect my work relationships. I see my clients everywhere! Restaurants, golf courses, supermarkets, in traffic, you name it. Starting to get a moon face it’s a total giveaway I think course I could just be paranoid and nobody will even notice not sure it’s only been a few days. Just lucky to be alive I guess. Thanks for sharing your story and letting me share mine… John.

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